Pulmonary Embolism Support Group

That's such disturbing news-------and I'm so sorry. Vent away!

[another spelling for idiopathic is IDIOTpathic---- no offense to your pulmonologist, of course.]

I've SO been where you are. Just so many issues and stuff to stay on top of and no good solid answers anywhere in sight.

With regards to the reproductive stuff, are you trying to preserve fertility with all this? If you aren't, I know there are some other procedures that can be done like endometrial ablation to help with ongoing and excessive bleeding. I had to have a fibroid embolization done last year and, as a side benefit, it also really helped out with bleeding issues. It's been a walk in the park this week.

As a plus, I have an OB/GYN who is very familiar with clotting issues and has clotters in her own family. She's been extremely proactive in trying to find solutions that do not have hormones involved in the treatment, since she knows that's a no-go for me.

Would you be doing the mirena to control bleeding issues or for birth control? If just for birth control, I'd go with the copper IUD over mirena, although that can cause slightly heavier periods for a while until you adjust. If the bleeding issues are a bigger concern, then maybe some sort of procedure to try to keep that in check.

I mean, yeah, for a while you do sort of feel like a hamster on a wheel. Endless appointments (I had more than 100 in the year after my PEs) and pretty much no information to work with or steps in a good direction.

I remember your posts about the "defects" left over from the clots. You're only a few months out and it is totally possible that'll heal and go away. It also doesn't necessarily mean that the clots are still there, just that your lungs are still recovering ... which you already knew, right?

I did the rounds with the echos too, as well as a bazillion tests at our local lung specialist hospital. Everything came out fine, which was a relief and something I could cross off my to-do list. But it really did get exhausting. I had one day off a week after my PEs, and it seemed like all I did those days was bounce from doctor's office to doctor's office. It is so beyond exhausting.

My clots are considered idiopathic too. I had two DVTs that were blamed on BC, but my PEs came out of the blue and I hadn't had anything hormonal in almost a year at the time. I've had two rounds of genetic tests and negative for everything. They told me at the hospital that I might just have something they can't test for yet. New things are being learned about clotting every day, so maybe clotters like you and I will have some answers in the future.

Not much advice here except to say that you're not alone. I've been there and made it through, although I'm still weary of doctors. And there is progress, it is just much, much slower than any of us would like to see.

Hang in there! Take a deep breath and maybe give yourself the day off from thinking about health stuff. Do something else. Sit in the sun or eat some really decadent ice cream. Something to pamper yourself for a little bit. You can deal with the rest tomorrow (or maybe August?).

I can't do the mirena for contraindications, and paragard makes bleeding worse, not better.

I don't need contraception at this point because we've had sex like 2-3 times since the PE and I REFUSE to seek a permanent solution to a temporary problem as a result of a time bound treatment. Besides near as I can tell, the ablations don't stick.

At one point I was telling myself that if I go off the warfarin that I will go ahead and have that last child i'd like to have against all rational reasoning, there was kind of a wake up call from the PE with that....like if there's things that I want to do, I should do them, because I might not be able to later.

I just bought some sea sponges for these kind of periods.....they get moistened and then go up in there to soak things up.....I got three sizes, so maybe that will help to manage this stuff.

Idiopathic is a legitimate medical term. Some things can't be explained. Like Toss said, and my hema said too, there may be some clotting issues for which there is no test yet, and that they are learning new stuff about clotting all the time. It's a hard thing to swallow at first when you're told your body just likes to clot with no known reason.

Bleeding like you are can make you really sick with anemia, causing all kinds of issues, like physical and mental fatigue, chest pain, weakness, shortness of breath, etc. I'm sorry you're going through that. I struggle with internal bleeding in my colon from my ulcerative colitis and warfarin sometimes complicates that. It sometimes is really a struggle for me to keep it together.

And I too went through a period after my PE where everything in my body just felt like it was falling apart. I got a DVT 6 weeks after coming off warfarin for my first PE/DVT, had to go back on the stuff, then through all the CT scans I had, they noticed that my thyroid had increased in size since each subsequent CT scan, so I had to get my neck biopsied and right after that, my colitis went out of remission and I was quite ill for about 6 months from that. I needed iron infusions because my blood counts were so low. I seriously couldn't function, couldn't think, could barely walk. That's why I mention the concern about anemia. Anyway, for a good year, I felt like I was living in doctor offices and getting all kinds of tests, to either confirm a diagnosis, or eliminate a diagnosis and it just wears you out. A hamster wheel is a really good analogy. For me when I get stressed, usually it's peaks and valleys. But during this time, it was peaked constantly. I think that added to my over all poor health during that time.

But it does turn around. It really does. It's just so slow going trying to get to the bottom of a health issue. I'm going through something right now with some health issues where we can't pin point what's causing the problem. How I'm handling that this time around is to keep my wits about me, look at it like it's just a problem to be solved, and that I just have to go through this process of elimination until something sticks. I refuse to lose my shit over it like I did after my PE when all these health issues exploded. It's wasted energy and doesn't serve me well.

Please take some time to just decompress, like Toss mentioned. You deserve some peace. Hope you start feeling better.

So last night I ordered some sea sponges for that long scanty period (this time) because the pantiliners are driving me batty. ....in case folks don't know, there's a whole bunch of sanitary products that are superior in many ways, eliminate waste going to landfills etc....Menstrual Cups are one, reusable pads are another, sea sponges. They are designed to keep trash out of the refill, minimize the cost of supplies and make women more comfortable. Some women have issues with the chemicals and the materials in some feminine products and so these are great options.

My psych person and my GYN did talk, my psych person did also lay out the same problems, and I just had a good conversation with my new GYN about what the plan is, other options (like the ablation, etc) and what I want in my life, and a couple of options under certain circumstances for this, since I am idiopathic. I feel like I have a plan, and am really glad that she took me at my word and did consult as I asked. I think it was a productive conversation, which is reassuring, both in current situation and things that might come up.

I feel like I have a bit more control today and since I took action on some things, I am calmer. I suppose I could take action on some other things and feel even better.

Also I have a class tomorrow that I am going to, where I get to see some old friends, learn some new things and generally just chill out.

** Idiopathic is a legitimate medical term****
" arising spontaneously or from an obscure or unknown cause"

For example
"Idiopathic thrombocytopenic purpura (ITP), also called immune thrombocytopenic purpura, is a blood-clotting disorder that can lead to easy or excessive bruising and bleeding. ITP results from unusually low levels of platelets — the cells that help your blood clot."

Thanks to rmb for clarifying the word 'idiopathic'.

Some might not realize I was making a joke with the word 'idiotpathic' I, of course, didn't invent that word. It's been used a lot on health forums and elsewhere:

"In the American television show House, the title character remarks that the word is "from the Latin, meaning: 'We're idiots 'cause we can't figure out what's causing it.""

House... that character is so ridiculously painful for me to watch, ha!

No I knew you were making a joke. I guess I wanted new folks reading the discussion to know that if their docs use that term, it's legit, and doesn't mean that their docs don't know what they're talking about.

CeallachKnits, I'm so glad you had a meaningful discussion with your doc and that you feel like you have a plan. It kind of gives you some power back and a glimmer of hope.

Watched one episode of House while I was on leave from work. First time ever and it was about a bleeding disorder. Um... no...
But the quote is hysterical!
KS